Lots of pain and no diagnosis: he even thought about amputating his arms and legs – 12/6/2022

It took Samuel Oliveira, 44, with daily pain and inability to sleep well, to find out that he has a chronic inflammatory disease that causes back pain and always gets worse at night. In times of crisis, he took his own life to end his pain, but he managed to overcome it and is now working to raise awareness about the disease and help other patients. Here is his story:

“The first symptoms appeared when I started to feel a lot of pain in my back, at night, when I went to bed. At that time, I was 23 years old, working as a health worker and I thought it was because of the heavy equipment I was carrying in my backpack.

At the age of 24, I moved from Bahia to São Paulo in search of new professional opportunities, wanting to get a job with less physical exertion, imagining that this could alleviate the pain. I got a job as a general service assistant in a gym, then went to work as a janitor and started college in physical education.

At this stage, the pains returned, but this time they were in the right ankle. I went to the hospital thinking it was a sprain, but the doctor said it was tendinitis, he gave me medicine and he sent me home.

From then on, the pains did not stop and appeared in different places, on the left knee, toes, toes, hips – these regions became hot, sensitive and swollen.

I went to general practitioners of foot and ankle and orthopedic specialists, but they always said the same thing, that it was tendinitis, tenosynobitis, and the pain was due to overloading other joints. They indicated physiotherapy, plaster and medication, but nothing helped.

Image: Personal archive

The pain was daily, intense and began to affect my daily life and mobility. I had to use crutches because I couldn’t walk anymore without help. This made it impossible for me to take practical university classes in physical education and caused me to be bullied by colleagues who called me ‘quebradinho’ and ‘aleijadinho’.

Over time, I have had four major crises. In one of them, due to the pain, he did not sleep well, woke up several times at dawn and only got up in case of serious need to go to the bathroom or take food. I also thought about asking one of the doctors to amputate his arms and legs.

One night, in an act of despair, I tried in my life. What I wanted was to not have to wake up the next day, but I woke up and went to the emergency room of the Hospital das Clínicas de São Paulo, where I was treated.

After telling me the story of my pain, the doctor on duty who saw me said that my case was rheumatological. I was referred to another hospital, where I began an investigation, underwent specific tests, and was diagnosed with seronegative spondyloarthropathy, a set of diseases that affect the spine and joints.

With an accurate diagnosis and not knowing exactly what disease I had in this group, I underwent a new treatment, which was not very effective.

Four months later, the rheumatologist ordered new tests, and at the age of 28, I found that I had ankylosing spondylitis, a disease that causes inflammation in certain structures in the spine as well as in the joints, which can cause pain in other parts of the body. .

Samuel Oliveira has ankylosing spondylitis - Personal archive - Personal archive
Image: Personal archive

The first question I asked the doctor was, ‘I’m a physical education student, can I work in the profession?’ He only replied that he was deaf and a musician.

I needed to know that because the future of my career was at stake, my goal was to graduate, return to Bahia, and open the first academy in my city. I was thoughtful with the doctor’s response, went home and searched for everything I could about the disease, but found very little, a brochure from the Brazilian Rheumatology Association and a group of Orkut patients with the disease.

As I began to read foreign articles and learn more about the situation, I set up a website to share information about how to deal with the disease, and to share experiences with other patients.

I am currently participating in meetings and initiatives to raise awareness about ankylosing spondylitis.
Over the years, I have adapted to the changes that my illness has brought me. I studied physical education, but the doors to work never opened. I volunteer, blog and manage the social networks of a group of rheumatic patients in Ribeirão Preto (SP), but I would like to work as a swimming teacher – I practice this sport every day and do water aerobics twice a week.

Due to late diagnosis and correct treatment, I was left with some sequelae and limitations. I can no longer exercise using my arms and legs, I can’t drive, my right foot has fallen (I can’t lift my toe), I’m lame, my wrists are compromised and I’m in pain. lumbosacral spine. I am currently being treated with biological drugs to control the disease.

Samuel Oliveira has ankylosing spondylitis - Personal archive - Personal archive
Image: Personal archive

After so many years of living with ankylosing spondylitis, one thing I have learned is that accepting the disease is not about giving up, but about acknowledging that it exists, and trying to deal with it in the best way possible. ”

Learn more about ankylosing spondylitis

Ankylosing spondylitis is a chronic inflammatory disease that affects young people between the ages of 20 and 40, especially men. It is multifaceted, with a genetic component associated with environmental exposures that can affect the immune system, such as infections, changes in the gut microbial flora, and smoking.

The main symptom is back pain, especially in the waist region. Discomfort can often be noticed as a result of daily activities, but the pain of ankylosing spondylitis has a striking feature: it is daily, worse at night — the individual may wake up asleep — or in the morning, causing it. the sensation of morning stiffness.

Symptoms usually improve during the day as the person comes out of rest and moves. Other symptoms include lower back pain and / or recurrent swelling and / or tendinitis of the lower limbs.

Diagnosis is made by identifying a set of signs and symptoms of chronic back pain in combination with imaging tests, such as radiography and / or magnetic resonance imaging, as well as laboratory tests.

Joint pain and inflammation give the patient a clearer clue to the rheumatologist to refer to a specialist who knows the disease.

Initially, back pain caused by the disease can be confused with poor posture, contracture and muscle tension, so it is common for people to seek out orthopedists and / or clinicians.

It is important for patients to pay attention to their pain and seek medical help when they realize that their symptoms are “out of the ordinary.” The earlier the diagnosis is made, the better the outcome of treatment.

The treatment of ankylosing spondylitis involves the use of anti-inflammatory drugs, conventional drugs to modulate the immune system, and immunobiological drugs that specifically block certain inflammatory breakdown proteins and help control the disease.

Regular exercise and smoking cessation are also the practices recommended by rheumatologists, who are the best specialists in diagnosing and controlling a patient with ankylosing spondylitis.

In addition to pain, there may be physical limitations due to changes in joints and ligaments, reduced range of motion, ankylosis. The threat of losing physical and motor independence can have a negative impact on a person’s mental health, with anxiety and depressive disorders.

Half of the patients may have inflammatory conditions that are not limited to the musculoskeletal environment, such as uveitis (inflammation of the eye), psoriasis (inflammation of the skin with scaly and reddened features), and colitis (inflammation of the intestine). ).

Ankylosing spondylitis has no cure, but it has control, allowing the person to lead a normal life. Proper use of medications with a balanced diet and regular physical exercise practices aimed at prolonging and strengthening good exercise will help to achieve a better quality of life.

If you have suicidal thoughts, seek specialized help, such as your city’s CVV (Life Appreciation Center) and Caps (Psychosocial Care Centers). CVV works 24 hours a day (including holidays) on 188 and responds by email, chat and in person. There are more than 120 service stations in Brazil.

Source: Cristiano CampanholoRheumatologist in Santa Casa, São Paulo.

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